30 years successfully on Dilantin/Primidone--now Doc want me to switch to Keppra?

[ToryMagoo]

Hi you all

I am new here, so this is my introduction.
My name is Tory Christman. You can "Google" it and find tons
of posts and videos I've made re the Cult of $cietnology,that made me get off of my much needed medication. I got back on it in
1972, thanks to my Mom. Still had to fight them for 30 years. I finally escaped out in July of 2000.
You can check out ToryMagoo44 on YouTube

I began taking Dilantin and Mysoline then (Primidone-generic name)
when I was 18 and had Grand Mal Seizures. The meds controlled it, until $cientology insisted I get off/ twice nearly killing me.

So? I'm very wary to switch medicines.

I have not had *a* seizure in 30 years, while taking Dilantin and
Primidone.

But...now (at 66) my memory seems to be getting much worse.
As a result, my new neurologist suggested I switch out one Dilantin (100 mil- 2X/Day)....to one Dilantin, one keppra (750 mil)/2 times a day.

So now, for 30 years, it's One Dilantin 2X's day
One Primidone 2X's/Day...with no seizures, no problems with liver
or kidney and really none with teeth or gums, either, except a bit excess
inlower gums.

She suggests starting with One Dilantin (100 mil), One primidone (250 mil), one keprra (750 mil)
at night, and One Dilantin/One kepra in the AM.

I woke up ***super*** dizzy and feel very drugged, hours later.
I've called my Dr---"She'll call you". It's 4 pm, no call.
I called the pharmacist, who said "Give it 5 days".

So what do you all, who KNOW Epilepsy---think? Not your medical opinion,
as you're not Drs, but your experience opinion?

Please help and thank you ALL :hugs:

Tory

 

[SlimBlue]

Hi Tory, welcome to CWE

I'd be wary as well to be honest. Different meds affect us all in different ways though- for me keppra really dumbs me down and my memory is terrible, but that doesn't mean it won't be better for you.

The worst time is the transition period between any meds, after you've settled down on it you may find that your body deals fine with it. Until then, it's really just a matter of grinning and bearing I'm afraid.

If you find that it really is bad though, and doesn't seem to be getting any better- or you develop any other side effects- then make sure the doctor *will* take your call.

 

[SlimBlue]

I've just realised- I remember you from usenet

 

[ToryMagoo]

Thanks, Slim Blue!

Good to know I'm not alone on this.

She did call (the Doc) and said to cut it in 1/2 for 4 days...then return to 750.

I will watch it all, verrrrrrrrrrry carefully :banana:

Best,

Tory

 

[ToryMagoo]

I've just realised- I remember you from usenet

Really? OMG---that was many years
ago, eh?

Did you follow my escape out? :ridem:
Small world, eh?

Best,

Tory

 

[SlimBlue]

Yes, *ramping up* is the key, tbh i'd try 1/4s for a few days if you can w/o crushing them to a powder (not recommended).

Neuros almost never give this advice- they seem to have no concept of how much effect these meds have- and so the change is a massive shock to the system. I had the same problem with lamictal.

 

[SlimBlue]

We didn't believe it at first, in fact we thought you were a whole black ops team lol

Wow, it is years

We may have been 2 sides of a coin back then, but here we're the same..

I'm so glad you got out :hugs:

 

[ToryMagoo]

Were you ever "in", or a critic (as Anonymous didn't arrive, as u know, until 2008). I remember in 2000---peeps posting I must be DM, "Flag" etc.

The funny part is I was madly posting (not FOR them---AGAINST them, unknown to most---even to this day). So people watching saw at 4 am pst/ (which is 7 am EST) OMG! "They must be at muster".

No--in truth, at 4 am, I went to bed, having made thousands of posts, hoping
to wake up, un known to even ME! I made 4,000 posts on 4 weeks, woke up, escaped OUT YEAH! :banana:

Well, yes, here I am

Thanks for your help....then and now. :hugs:

Tory

 

[SlimBlue]

Hahaha I wish I'd have known the truth at the end, as you escaped. My memories are more mid to late 90s- so just before that really..

I'd just randomly flame now and then, but tbh I was dealing with the start of my E then, so my usenet posting faded a lot

My pleasure :hugs:

 

[Dolores]

Tory, For what it's worth, I've been on Dilantin & Phenobarbital for 40+ years. I haven't had a seizure in 15+ years. I refuse to change to a new drug - I've spent my life figuring out the side-effects and how to deal with them. I have a wonderful GP who keeps a watch out for all the potential problems.

As for the memory thing, I've learned ways to deal over the past 40 years. It was most nerve wracking in the first 20 because no one told me it was a side-effect of epilepsy &/or the medication. So I ended up thinking I was stupid but fooling everyone into thinking I'm smart. Then comes the internet and I start to search and the first thing I find is a reference between epilepsy and short term memory. It was a relief to know there was a reason. So now I just deal with it and don't stress out when I forget.

I do not want to switch to a different drug in the hopes of having less side effects since all the drugs have side effects. My GP agrees with me though my neurologist keeps pushing newer drugs.

Hope everything works out well for you.

 

[ToryMagoo]

Tory, For what it's worth, I've been on Dilantin & Phenobarbital for 40+ years. I haven't had a seizure in 15+ years. I refuse to change to a new drug - I've spent my life figuring out the side-effects and how to deal with them. I have a wonderful GP who keeps a watch out for all the potential problems.

As for the memory thing, I've learned ways to deal over the past 40 years. It was most nerve wracking in the first 20 because no one told me it was a side-effect of epilepsy &/or the medication. So I ended up thinking I was stupid but fooling everyone into thinking I'm smart. Then comes the internet and I start to search and the first thing I find is a reference between epilepsy and short term memory. It was a relief to know there was a reason. So now I just deal with it and don't stress out when I forget.

I do not want to switch to a different drug in the hopes of having less side effects since all the drugs have side effects. My GP agrees with me though my neurologist keeps pushing newer drugs.

Hope everything works out well for you.

Thank you for this, Delores. It's good to hear from someone in a very similar boat re years of taking it successfully, and dealing w/ the side effects. (I was almost exactly as you were, until the Net, too

Thanks SO much!! :hugs:

Tory/Magoo

 

[Belinda5000]

Tory,

I wouldn't change a thing if you've been controlled with what your taking with Dilantin and Primidone, and this comes from a person who's had E 50 yrs but didn't start getting some control until 2011 and the longest was 4 1/2 months.

 

[ToryMagoo]

Thank you, Belinda!

I think I agree with you...it's just this new neurologist does not.

Blessings

T

 

[ToryMagoo]

Dolores...

Thank you for sharing with me your experiences.

I decided today, after cutting the one Keppra in 1/2 and feeling (still) like a truck drove over me, tired, lethargic, and diff time walking...I told my Doctor FORGET it:I'm going back on Dilantin.

Some people may say "you didn't give it enough time" and this may be true. However, thanks to the Net, I have access to TONS of personal stories, and the Keppra ones are not great, plus just about e/one agrees:
"IF IT'S NOT BROKEN---Why fix it?"

So there ya go. I'll keep ya posted.
Thank you ALL SOOOOOOOOOOOO much! :woot::shake:

Best,

Tory

 

[ToryMagoo]

PS: Just to finalize this day....
even with 1/2 of Keppra ...I've been exhausted all day
and SLEEPING a ton, too.

I've read from quite a few others who had this exact reaction, too.
Since I'm new here...I cannot post the link, but here's a place to go
look with some good info, too:
www (dot) epilepsy (dot) com/node/996482

Anyways....I'm returning to my old meds, despite the neurologist
wanting me to "suffer on through it" (My words, not hers).

Thank you ALL...I'm so happy I found this site!

***hugs****

Tory

 

[Belinda5000]

Tory,


I think it's great your standing your ground and staying on the med that are controlling you.
Great for you, for speaking your mind.

Belinda

 

[ToryMagoo]

Tory,


I think it's great your standing your ground and staying on the med that are controlling you.
Great for you, for speaking your mind.

Belinda

Thank you SO much, Belinda!
After escaping out of the "church" of $cientology, speaking out
against them in 2000...(when only 4-5 others would w/ their names--until
Anonymous arrived in 2008), plus making over 700 videos telling people what THEY won't tell them
..........I am s/one who speaks out, oh yeah. :woot:

I appreciate your kind words re this area. I really do
Happy Thursday to ALL ((hugs))

Tory

 

[SlimBlue]

Me too Tory. If Keppra was suggested because of slight memory probs with the Dilantin, well Keppra has it's own probs- memory included. If your gums are ok with it, yeah I think you've done the right thing too.

Happy Thursday

 

[qtowngirl]

hi tory

the three oldest (like old!) seizure meds are phenobarb, dilantin, and carbamazepine, and it's always a good and bad convo. research has shown how effective they are, hence still being prescribed. but also how their long-term damage doesn't usually show until many years later (10+ years). due to this i agree with everyone else - if you haven't been damaged, atleast in any life-changing way, and it's kept you seizure-free 30 years (congrats!), i wouldn't change a thing.
keppra and vimpat are the two meds i hear/read/feel the worst about; vimpat is too new to be proven safe for our health (i had to take myself off, bleh) and keppra changes people mentally, and rarely for the good (plus, doseages are SO high).

good for you w/dilantin, that's major success. myself am on the tried and true carbamazepine; it didn't keep me simple partial-free but going almost five years without a grand mal was THE BEST. i stick with regular testing in regards to the carb (liver and bone loss), and so far levels have stayed normal (in the low range, but normal). after surgery i'm in a high percentage of never having another seizure, so meds are over time being evicted, however i chose to stay on carb for life, to which my epileptologist agreed 'good idea, for a safety net.'
so we get each other... stick with the old until we fold!

:hugs:

 

[ToryMagoo]

hi tory

the three oldest (like old!) seizure meds are phenobarb, dilantin, and carbamazepine, and it's always a good and bad convo. research has shown how effective they are, hence still being prescribed. but also how their long-term damage doesn't usually show until many years later (10+ years). due to this i agree with everyone else - if you haven't been damaged, atleast in any life-changing way, and it's kept you seizure-free 30 years (congrats!), i wouldn't change a thing.
keppra and vimpat are the two meds i hear/read/feel the worst about; vimpat is too new to be proven safe for our health (i had to take myself off, bleh) and keppra changes people mentally, and rarely for the good (plus, doseages are SO high).

good for you w/dilantin, that's major success. myself am on the tried and true carbamazepine; it didn't keep me simple partial-free but going almost five years without a grand mal was THE BEST. i stick with regular testing in regards to the carb (liver and bone loss), and so far levels have stayed normal (in the low range, but normal). after surgery i'm in a high percentage of never having another seizure, so meds are over time being evicted, however i chose to stay on carb for life, to which my epileptologist agreed 'good idea, for a safety net.'
so we get each other... stick with the old until we fold!

:hugs:

Awwwwwwwww: Thank you SO much, gtowngirl :cheers:

I'm so very happy to hear this! Here's my latest video I made,
really to all of you:

Ooops: I haven't been around long enough to post a link,
so if you will, please go to ToryMagoo44 on YouTube...
I made a video really to all of you. ((And please subscribe, if you're interested. I made videos about all different kinds of topics, and most people like them).

:hugs: Thank YOU

My love,

Tory